STOP FOR A MOMENT. TAKE A DEEP BREATH & EXHALE. IT'S AUTISM--NOT THE END OF THE WORLD.

Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

6/16/08

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.Oh, but wait...but they do need you. Sometimes, at least.A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.

I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

I have this idea that, whether they know it or not, most/all parents end up being "neurodiverse"----whatever they say about "cure" and "recovery," they love their kids for who they are. Call me an ideaist!

This particular attitude has really been grating on me lately. Especially since some fellow recently wanted to know how autistic my kids were. Presumably so he could claim that they weren't really autistic or autistic enough to "count".

Sharon: Oh yeah, it's all about the sob story to raise some cash. Pull out the violins, boys, we need more moola. And just where does all that money go...????

Catana: Well, remember, autistic adults don't exist. Right? They'd prefer to just ignore, I think, all adult autistics (the "high functioning" or Aspies don't count...and those in institutions are out of sight, out of mind...). I wonder if they ever catch themselves thinking about this: ...and will never darken the doors of the curebies. Let's hope, and one of them will get a conscience one of these days. :)

Sam: Yes, we parents (or perhaps our children) are subjected to a litmus test to see if we "count," in some sick way to see if our kids are "autistic enough." It's rampant on message boards, almost competitive in nature (oh yeah? Well my kid must be worse off than yours, so you don't understand!). Your points are right-on.

Bonnie: Thank you. I actually made that. I attempted to get it on CafePress...but so far it's not looking great there. When I have time, will mess around with the format & see if I can make it work. Will let ya know if I do. Thanks again!

Ever notice though, that if someone is "high functioning" or (gasp) even an "aspie", but decides to talk about how awful autism is and how awful all those evil neurodiverse people are for not wanting a cure, everyone suddenly stops that "You're not autistic enough to speak for us" thing?

That's a great question Amanda. It seems the reason that others don't say such aspies/HFA aren't autistic enough to represent LFA, is because those HFA actually speak in the interests of the unfortunate ones on the spectrum, and not just for themselves. They're also more likely to have dealt with actual misfortune than the shiny anti-curebie aspies.

Calling some HFA/aspie not "autistic enough" isn't done for no reason. Their opponents don't like their ambitions to keep the LFA from getting ahead, keeping themselves as the only fortunate ones on the spectrum. A lot of the anti-curbie HFAs seem to be the ones without significant impairments, just about all of whom have tremendous abilities. Doesn't seem very representative of the whole of people on the spectrum.

So I think ok, it probably is kind of bad to have mostly NT describing the plight of those on the spectrum. But I hope those from within the spectrum who speak for them would be those who would advocate for the majority of the spectrum.

The truth that the media and the curebies don't want to think about, is that as their kids grow and improve, they will become part of that "high functioning" adult population they so disdain now.

(That's right. The cold, hard truth is that their kids will grow up to become *us*, not *them*.)

Just watch. When the curebie parents' kids grow older, and gain skills and competence, and clear hurdles, (and surely those curebie parents *want* such improvements to come to pass, don't they?), and the things that matter to them start to include housing, post-secondary education, employment, living in the community, developing a network of friends and supporters, etc., those curebie parents will be singing a different tune. A tune more like *ours*.

What I don't understand is why they don't join forces with us *sooner* rather than later.

No one is telling high functioning autistic persons to shut up. Parents like me, who has a son with autistic disorder, assessed with profound developmental delay, ask that thhose with so many gifts do not try to pretend that they speak on behalf of our children. By all means if you are high functioning autistic or aspergers embrace your autistic disorder but do not pretend that you share the same life conditions as people like my son who can not understand these discussions and can not compose essays for the internet or otherwise.

Speak for yourself but not for those on whose behalf you have no right to speak and whose life challenges you do not share.

Kristina Chew's "ideas" are many things but they are not idealistic unless you equate idealism with a Neurodiversity mindset shared by few parents of autistic children. To imply that somehow parents seeking to cure their children of a neurological disorder might not actually love their children is silly and offensive.

phil, you have an interesting way of lying. Why do those like you still use piss ant words like rubbish? Not every LFA grows up to be a HFA. Especially not the truly fortunate HFA you guys like you. LFA adults are something those like you dread having to talk about.

If all of those children will turn out HFA by adulthood, and if the parents were to know that, there wouldn't as much complaint from parents. If such parents were to "sing your tune" in the event of their children becoming high functioning, then I would regard it as another sad and vile instance of selfishness.

A lot of those things you mention the parents' children would do as they become older will never come for some, unless in time more effective treatments are devised, which you scream against.

I have actually been told by other parents that my child is not autistic. I have had my child's place in her school questioned by other parents because she is not "autistic" enough. What they do not understand is that she does not fit in anywhere - as a HFA child, with the sensory and behavioral issues that go with autism, she does not fit into a mainstream school. This is not to detract from the difficulties that families of kids and adults with LFA live with. Once again, the debate is polarised, and we are split apart instead of united. It's so unhelpful. I know so many parents of their LFA children who are just as proud of their children as I am of mine. It's not about low functioning or high functioning - it's about acceptance and state of mind. Are you going to spend your time with your child trying to make them someone they are not, or are you going to love and accept them for who they are, and provide them with the tools to function in a NT world? Because the rest is just chasing windmills.

"What I don't understand is why they don't join forces with us *sooner* rather than later."

Good question. I suspect that the answer is complex. On one hand, I think it's damn near impossible for some not to hang out for the brass ring of 'recovery'. After all, my kid has made all this 'progress', so why not that 'little bit' extra. OK, so their ToM is compromised and they don't recognise that the little bit is a lot more than the outward appearance of normality. One an autistic, always an autistic.

Then there's the portion who want the whole thing to disappear from the family as fast as possible into whatever can be concocted to represent the institution. The existence of functional autistics is not going to persuade politicians to build group homes, since there's no votes in it anyway.

Our kids get in the way of a whole raft of self-serving agendas - snake oil salesman, pro incarceration merchants, designer parents and so on.

"Their opponents don't like their ambitions to keep the LFA from getting ahead, keeping themselves as the only fortunate ones on the spectrum."

Where does this assumption come from, the assumption that "HFA" want to keep "LFA" from getting ahead? There seems to be the assumption buried in that claim that if a "HFA" disagrees about what is required for a "LFA" to "get ahead" then they must not want them to "get ahead". Is that really what those who insist on creating this divide in the autistic community believe?

What drives the desire to segregate the autistic community along such lines? In my experience it has been a desire to take the moral high ground as the more injured party with more right to speak than anyone else deemed less injured. Frankly, when people start taking that kind of attitude it puts them firmly in my not-worth-listening-to category because they are clearly someone unable to see past the end of their own nose and therefore unable to properly assess a situation and provide suitable solutions to any problems that may arise.

My brother is diagnosed asperger's or high functioning. He wasn't diagnosed until he was 15 even though my parents continued telling the doctors that there was more to this than adhd. Finally, someone stood up and listened and observed and said Autism.

For adaptability in his *high functioning* well he can talk. That is a bonus! His living on the adaptability, he went as low as a 3-5 year old in areas, and what they would be able to complete. do I find that to be high functioning? No, not in a million years.

Autism is one big umbrella. We need to embrace and help each other out.

My brother will be going to live in an assisted living facility. It is very sad for my whole family. We love him, but many think that he will be able to learn better in this environment. He is nearly 18. He doesn't understand much and social cues are way off.

People who think that they shouldn't be in the autism spectrum , where do you think he should go? His communication skills are 0. He doesn't relay happy or sad often at all. He mostly just relays anger. His only way to cope with communication is to run away. Please tell me where he should go to get help? Should he just live on the streets since he can't communicate? Silly, and absurd!

"Where does this assumption come from, the assumption that "HFA" want to keep "LFA" from getting ahead?" sam, don't be so clueless. The assumption is believed because HFA have disagreed with just about every therapy that would be used to help LFA. They have also opposed research into other effective therapies.

They have even made it clear they are also specifically against removing impairments from LFA by talking about the social model of disability, implying that impairments are implemented by society, and that disability is ok and should even be celebrated. They are only in favor of the progress of a child if it comes naturally without intervention. What more does someone need to conclude that those HFA want the LFA to stay disabled?

How could anyone not know why there is such a divide? HFA are succeeding and gaining much more than LFA, and some HFA want it so that LFA will go through life disabled and unable to do what many HFA can do and take pride in. Most people involved in this issue aren't going to just bite their tongue and let these oppressive ambitions become effective. The overbearing out of touch attitudes are sickening.

"The assumption is believed because HFA have disagreed with just about every therapy that would be used to help LFA. They have also opposed research into other effective therapies."

Could you provide some examples of this phenomenon for me? What therapies would you be talking about exactly? Is any consideration given to why they disagree or are all HFA consider to be just rotten through and through?

"They are only in favor of the progress of a child if it comes naturally without intervention."

Who are "they" where are they advocating such? You do realise that you are painting a rather diverse group of people with an extraordinarily broad brush.

"...and some HFA want it so that LFA will go through life disabled and unable to do what many HFA can do and take pride in."

Really? To what end? How did you (or any others who would agree with such a statement) come to this conclusion?

I have to confess that I really don't recognise the kind of people that you describe.

sam, I've had enough of the huh, who, what, when, where routine when one of you neurodiverse pushers have been revealed for their true intentions. Not only do they (the neurodiversity people) oppose biomed staunchly, but even ABA, which is a truly proven therapy that has brought real benefits.

This group of people aren't that diverse in views. There is a large consensus about many things they argue. They say that almost any therapy is bad or mean, that coming up with highly effective therapies would be impossible, and imply that they will just improve on their own.

They don't want anyone drawing attention to the impairments, and just want to go on about "being positive" and lovey dovey crap. They antagonize those who complain about the impairments and call them whiners. Don't act like you don't know this and as if only a few of them act like this. That kind of sugarcoating and washing over of horrors makes me believe the HFAs who hold such views want disability to continue for LFA.

I'm going in order of these comments since I've fallen behind, so bear with me! :)

@ AmandaYes, if you can help peddle their agenda, then suddenly you are "autistic enough." I keep going back to the bottom line being about respect--respect for every individual on the spectrum.

@ LurkerI guess we see the message from these various autistics much differently. I see the majority of HFA, Aspies, and so on wanting better adult programs, teen services, appropriate living options, ending abuse in facilities, etc. I do see them advocating for the entire spectrum, and even more for those who are "lower functioning." Perhaps we're hearing different people speak?

@ Phil...and the things that matter to them start to include housing, post-secondary education, employment, living in the community, developing a network of friends and supporters, etc., those curebie parents will be singing a different tune. A tune more like *ours*.

What I don't understand is why they don't join forces with us *sooner* rather than later.

See, that's my take on things. That is what we (from my perspective) fight for (along with respect!). My biggest concern, and where I would prefer to see organizations spending their money, is actually helping autistics--on all levels, getting those needed services, and so forth.

It's going to be a rather harsh reality when these parents who have taken out 2nd mortgages and gone way into debt to cover HBOT and chelation treatments realize that their now teen or adult child is still autistic. Then what? They'll have spent years and tons of money for what? Society won't have changed, and services will be grossly inadequate.

@ autism reality nbI honestly think a lot of parents, especially those who have older autistic children (regardless of where they are on the spectrum) lean closer if not truly believe in neurodiversity than not. ND is not against helping autistics, not by a long shot. It is not sink or swim.

ND as I see it (& I truly feel it is open to interpretation, so long as your foundation is in respect and acceptance of autistic individuals and their differences): It's helping your child achieve and make progress, giving them all the tools they need to go forward, with respect. ND is not against getting the best therapies for your child (it's even more about getting just the right fit for your child, recognizing that each child is unique & what works for one may not work for all).

ND, from my perspective, is at the core of the push for more teen and adult services, better education systems, living arrangements, and so on. ND is about fighting against the abuses that take place in institutions, and about accountability those centers. Yes, ND does push for acceptance--so that society is not such a cruel place to a. raise an autistic child and b. to be an autistic person. Is that so wrong? I know I sure hope the public is more accommodating and accepting of my child when she is an adult.

Now, yes, many who believe in ND are against ABA. I have to say, they have good reasons for that (specifically when we look at the history of ABA). We've never done true ABA, but have employed some behavioral-style therapies (mostly for her feeding difficulties). Honestly, thus far, we haven't seen improvements with that style. Now, teaching her to come to us when we call her (by giving a candy corn), that did work. We have never forced her to make eye contact or sit in a chair, etc. We've used our own independent style of therapy, I guess you could say. Play based, absolutely, with a lot of Floortime-inspired methodology. We've always approached life with our daughter as meeting her halfway, trying to understand why she is behaving a certain way, learning how to be the best parent for her, keeping her comfortable, not forcing her into any pre-set mold, changing our home environment and our lifestyle to better suit her needs. We embrace her, I'm unable to separate her autism from her, they are so deeply intertwined.

Kristina in no way implied that parents seeking a cure don't love their child. In fact, it was just the opposite, here's what she said:"...whatever they say about "cure" and "recovery," they love their kids for who they are." She didn't say they come around and then love their kids or anything of the sort.

I have to say, I truly feel you & I want so much of the same. I've gathered that you do a lot to expand services for autistic individuals. That's what I so badly want-more services, better programs. It's my hope that on some level, we can all put aside our differences and come together to make real change for our kids. I suppose I too am an idealist...

@ mandWhat you are going through with your child and her school placement is very common. And, sadly, as these children get older, into their teens, the schools do less and less. That is another issue, honestly, that this divide is making worse. When the media portrays only one segment of the spectrum, it becomes much more difficult to gain the services needed. Just because a child's label is "Asperger's" or they are considered HFA, does not guarantee they will be able to live independently, keep a steady job, and so forth. Same goes with a high IQ, that is not going to carry a person through this life, if they issues/delays with social, adaptive, and behavioral skills. "High functioning," what does it all mean? That's a whole other issue! :)

I agree 100% with your last paragraph too. You make great points...this is one I'll be hanging up at my desk:

It's not about low functioning or high functioning - it's about acceptance and state of mind. Are you going to spend your time with your child trying to make them someone they are not, or are you going to love and accept them for who they are, and provide them with the tools to function in a NT world? Because the rest is just chasing windmills.

@ alyricOn one hand, I think it's damn near impossible for some not to hang out for the brass ring of 'recovery'. That line is brilliant. I think you break this down perfectly.

@ samGreat, great comments. For the life of me, I do not know where these assumptions come from either.

@ baking a wishThank you for sharing your, & your brother's, story. I am sorry to hear about the situation you are in.

"High functioning" is a term that I've seen multiple definitions for. People so often hear "high functioning" or "Asperger's" and they think "quirky, maybe some issues, nothing major." It's not one size fits all, and there are plenty of those "higher functioning" that have a great need for assistance.

This country is so lacking in services, primarily for teens and adults. We need so many programs, and we need them NOW. The sad reality is, I imagine quite a number of autistics do end up on the streets. What are we, what is society, what is the government, what are all these autism organizations, doing to help?

I hope that you can find the best place for your brother, and I hope he can get the help he needs. I'll be checking in on your blog, and looking forward to hearing about your brother's wish being full-filled (best of luck with the bake sale). Take care.

As a mother of a daughter who is labled "moderate to severely autistic" I find the attitude of the people who seek a "cure" extremely frightening.

When my daughter was first diagnosed, all the information I was exposed to was screaming at me about getting her "cured" or about "early intervention" and I watched with growing dispair the autism speaks video and I was horribly depressed! I thought everything was hopeless.

Then I found some online groups where I was exposed to the neurodiversity movement, and the clouds parted!!! Hurray! I can enjoy my daughter now!!!

I don't know what science is going to discover, but what I do know is that my daughter isn't going to be a testing ground for unproven "treatments" and I AM going to enjoy her tremendous gifts, the biggest one being her love for me, life and joyful experiences!

c-snap, how nice that you are relieved of all of your despair and anguish by embracing "neurodiversity". Now you don't have to be bothered with worrying about your child. As long as you feel nice and relieved, and if she makes you happy.

I wonder what she really wants and will want when she grows up aside from pleasing you, but I don't think you would want to concern yourself with that. I wonder on who, unproven therapies should be tested on.

Despite:Being a member of my national and local autistic organisation, having worked in a team of professionals delivering care to people with autism, having studied with and under people with children/relatives with ASD's, having an ASD and a social circle with several ASD individuals, and having an interest in autism for well over 8 years now.....

I still have yet to come across any HFA who believes that we should sit around and do nothing about the issues people with autism face.

What am I missing out on? Can someone point me in the direction of one of these fabled beasts?

I'm an teen with Aspergers/High Functioning and this bothers me that people have that feeling about me. I admit I can't fully understand autismon the lower end but I was ostracized by a lot of kids when I was young. You can say that simply because I'm not "fully" autistic, that I am running a con game. I'm a person with feelings, please respect them for those of you who think I should "Shut Up!" Thanks for this post!

My son has always been high functioning, her has thrived using biomed to help him function better. I have not met a "curbie" parent who does not love and cherish their child as they are, and want others to do the same. Not sure why it is considered 'unaccepting' of their child by seeking out ways to help their children fuction better.

It really is not about curing autism, but improving the symptoms so the child can have the best possible chances at life.

Jenny McCarty never said cure either BTW.

And yes Kristina, I agree. ALL parents, including the ones seeking to recover their children, love their kids for who they are, and want them to live in a world that accepts and embraces them.

Its too bad there is so much conflict with the community. Live and let live.

I have recently realised that I probably have Aspergers. I would like a cure. I can't see what is so wrong with this. If it turns out that this is a neuro immune problem, and immune modulators work to fix it, what's the problem? If it turns out that the TMS machine can switch on the non-working parts of my brain, why not? I mean if I have those parts of my brain present, but not working, isn't it better to have them working?

The neurodiversity people don't have to have a cure if they don't want one, but I don't see why they should get to deny a cure to me.

My husband was in his 50's when he realized he had always suffered from Asperger's. I thin he would love to be able to understand other people the way I can. He is very lonely and he doesn't want to be. He really likes people. But I'm going to leave our marriage too. It's too hard on me. Too lonely for me. When our daughter is old enough, I want to leave. It's killing me, deadening me.

I just found your blog today...Thank God. Your info is spot on. I have a high functioning teen girl and she has many struggles. I love the message at the top of your blog "Having an autistic child is not the end of the world". This brought tears to my eyes as I am having a hard time today. But your message has given me strength. God Bless your blog.

Hello, I have been doing some investigating on sites related to adult autism. I know there is some sort of 'something' going on with me, but not exactly sure what it is. Here are two big signs that make me think it MIGHT be autism related, and feedback would be very helpful. As a child, I rocked back and forth all the time, even in school until about grade 6 when I felt ashamed of it. Also, I could completely block out people talking. I became very expert at looking like I was listening. I have bonding issues with anyone in my life, and don't have any friends. I sometimes want them, but don't know how to maintain that relationship well enough to keep someone interested. What do you make of this, and if it is related where can a person go for help with identification and resolution? How does a person know for sure?

I was hard as a child, I was bullied because I had problems being with others,I was hard for me to learn, I never saw doctors much. now I am married and raised a child did ok she is graet and understands me and does not judge, my husband works I can not it is difficult for me, so I do what I can he is good to me. I wish I was diagnosed sooner in my life, but I am high funtioning I was finally told, I was hurt, but now I have to learn to except it sometimes I just want to be by myself cause it is hard but I will keep going, it is sad we are treated this way, but my family loves me so I am ok.

As much as I hate autism and being aspergic, I totally despise these American organisations all about the 'poor parents' submitting their 'defective' children to utterly useless 'cures'. Mostly based off that money-grubbing quack Wakefield, who was struck-off here in the UK, of course he'd sell his crap in the U.S of A where most of the populace will swallow anything.

Forgive the metaphor, but me talking about my issues as an HFA adult feels like being Dave Chappelle in rehab in Half-Baked where Bob Saget and the rest of the group downplay his addiction because he never "____ed ____" for it. So if it's not extreme then it doesn't even exist. "Oh, does the poor widdle baby have acid reflux? Yeah well my uncle's wife's cousin has bowel cancer, so why don't you quityerbitchin."

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"Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person."
- Jim Sinclair

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*DISCLAIMER*

The views & opinions expressed on this blog are just that: views and opinions of the author. I do not, nor have I ever, worked for a drug company or the government. I am not part of any vast conspiracy. I do not receive any income from this blog, I do not have any income whatsoever. I am simply passionate about my child and her future, and about the rights legally afforded to autistic individuals.